We're thrilled to announce our first round of PWS research grants for 2017! Seven outstanding projects were selected for funding, totaling $795,221 in support. These projects address a variety of topics important in PWS, including behavior, genetics, and measuring hyperphagia.
May is Prader-Willi Syndrome Awareness Month, and FPWR has launched a new web page to help spread #PWSawareness at fpwr.us/PWSawareness. Throughout the month, the page will share new stories, tools, events, and activities to help raise awareness and build support for research to help our loved ones with PWS lead more healthy and fulfilling lives.
A special contribution by guest blogger Elizabeth Roof
Elizabeth Roof is a Senior Research Specialist at the Vanderbilt Kennedy Center and directs six research programs with children and adults with rare genetic disorders including Prader-Willi syndrome. Since 1995, she has personally evaluated more than 300 individuals with PWS. She has given a number of talks and presentations at international, national, and local conferences about current research practices and implications for treatment. She has helped write and produce three YouTube videos with FPWR and IPWSO on best practices in PWS, including her latest video on improving social functioning. Elizabeth with be joining us this year at FPWR's Annual Family Conference in Indianapolis, IN, August 25-27. Join us!
Many people believe that teens and adults with Prader-Willi syndrome don’t care much about making and keeping friends. We know, after seeing hundreds of people with PWS, that this just isn’t true for most. Many teens and young adults with PWs complain that they're lonely, they don’t have many opportunities to make friends, and it's hard to keep friends over time. A lack of social connection can make you lonely, anxious, and depressed. This is a very real struggle for many with PWS. They want to have friends, they want to do things out in the community, and they long for real connection with someone who accepts and understands them. We all do. Having friends and social opportunities mean less depression, isolation and psychiatric issues as people age.
4/17/2017 — Note: Bidding closed yesterday, but you can still see these beautiful pieces of art on Facebook!
Twenty unique paintings are available to the highest bidders in a unique art auction benefiting the Foundation for Prader-Willi Research (FPWR). Each piece of art, beautifully painted on a 12×12 canvas, was created specifically for this art show by individuals with Prader-Willi syndrome (PWS).
A new multidisciplinary PWS clinic at Vanderbilt University provides comprehensive and innovative care of children and adults with PWS. The clinic will enable patients to see a variety of PWS specialists in one location, easing the burden on patients and their families.
Prader-Willi syndrome (PWS) is a complex disorder, and, to date, supportive care and growth hormone therapy are the only treatments available. The rarity of PWS, the fragmentation of experts and stakeholders involved at each stage of therapeutic development, and limited funding add layers of complexity in the development of safe and efficacious PWS therapies.
Therapeutic development is a risky process that often requires more than 10 years and billions of dollars to complete. Unfortunately, 90 percent of drugs fail due to a lack of effect in patients.
The research plan for PWS needs to be comprehensive and proactive and include the right programs and tools to overcome these challenges and fill existing gaps. FPWR’s grant program and other research initiatives developed over the last decade have greatly advanced our basic understanding of both the genetic and molecular mechanisms of PWS, opening avenues for therapeutic development.
FPWR’s 5-year research plan for PWS comes at a crucial moment to accelerate the development of therapies by acting at each stage of the therapeutic development pathway.
The FPWR Family Conference takes place August 25-27, 2017, in Indianapolis, IN. Here are the top 10 reasons you need to be here!
10. Hoosier Hospitality
Our local Conference Host Committee is working behind the scenes to make this the best PWS conference yet! The conference hotel is located in downtown Indy, where you can kayak, pedal boat, bike or relax in a gondola along the scenic Downtown Canal, taking in the sights of public art, war memorials, and the Indy Zoo, Aquarium and Botanical Gardens, located right outside our conference hotel!
FPWR community, 2016 was yet another remarkable year for Prader-Willi research! Our supporters have allowed FPWR to fund more research than ever before, taking us closer to treatments for our loved ones with Prader-Willi syndrome. Read below for a few research highlights from the year.
The Foundation for Prader-Willi Research (FPWR), in collaboration with FPWR-Canada and FPWR-UK, is thrilled to announce our second round of PWS research recipients for 2016! Eight outstanding projects were selected for funding, totaling $746,200 in support. These projects address a variety of topics important in PWS, including social functioning, hormone regulation, oxytocin and gene regulation.
Zafgen, Inc., has donated its Hyperphagia Questionnaire for Clinical Trials (HQ-CT) instrument to FPWR to help enable the development of potential therapies for Prader-Willi syndrome.
The HQ-CT is derived from a well-established, caregiver-reported questionnaire initially developed by Dr. Elisabeth Dykens and her team at Vanderbilt University that provides an assessment of the food-seeking behaviors common among individuals with PWS, known as hyperphagia. The instrument has been validated in multiple clinical trials and is designed to evaluate a potential drug candidate’s impact on those food-seeking behaviors.